1. lgelb

    ALSA chapters that are now independent

    Just a note that as of September, the following chapters are no longer ALSA members as part of a settlement, with Jan. 31 the deadline for complete disengagement. So you are seeing web sites in different states of existence. Some now have "ALS United" in their names. Others have rebranded...
  2. lgelb

    Multi-Chapter lawsuit against ALSA National

    This is probably the best account of the issue that's not behind a paywall, and includes the Chapters' full Complaint as well as the ALSA statement in response. Essentially, National wants all the local Chapters to "federate" and close. 18 chapters have agreed. 14 chapters have filed a suit...
  3. Jshemnitz

    How does something like this happen?

    I went to a neuromuscular specialist who said the ALS symptoms that I thought I had were definitively not ALS based on his exam of muscle strength and reflexes etc...I feel better and then I read something like this and makes me think that I still might have this ( I have subjective muscle...
  4. K

    Also...Slow or Fast Progression?

    Karen, I must admit I am wondering the same thing...slow, fast, average? I know today is a gift, we should live each day and day by day, but my wondering has to do with decisions that need to be made. My PALS was diagnosed in January 2018 with symptoms becoming very noticeable in August 2017...
  5. Nikki J

    Stephen Winthrop

    A fellow Mass General patient who was an advocate for PALS and trustee for ALSA. He was a brave and good man who fought a long battle ( diagnosed in 2013). He will be much missed. Deepest condolences to his family and friends
  6. M

    A delayed introduction

    Hello All, I want to first say thank you for taking the time to read this post. I have avoided posting here for about 1 year but due to changes recently I have decided, still with some hesitation, to post. I was going to write more of my history but I do not want to take up your time any more...
  7. S

    Slow progresser (long post)

    Hello to everyone, this is my first post, after spending a lot of time browsing the forums. It seems like a very supportive place. I've noticed in these groups as well as in the local ALSA support group we go to, that some people are dealing with the stress and demands of a fairly rapid...
  8. R

    ALS FDA Trials Guidance Opinion Questionnaire

    This questionnaire was written by individuals with ALS. The results will be used to relay the needs and opinions of People with ALS to the ALS Association and FDA in regards to the recently issued FDA Guidance Document. Please make your voice heard. It will only be open for a few days since...
  9. lgelb

    Rant or something

    "Showing the reality of ALS" in a PSA campaign is a nice idea, but how real is it to portray PALS who have survived 10, 14 and 15 years so far (only ~20% live >5y), respectively, two of whom have trachs, rarely used in the US? Following each vignette with the hyperbolic tagline about having...
  10. lgelb

    ALSA conference live stream

    Is here, going on now.